Information blog for people suffering from both Neuropathy and HIV. An opportunity to exchange experiences, tips and opinions.
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It's of course pretty well known that chemotherapy can leave patients with neuropathy as a side effect but how does this have anything to do with HIV- patients, besides the normal percentage who unfortunately contract a form of cancer?
One of the fastest growing cancers, especially for HIV positive men, is colon or rectal cancer and this associated with the alarming rise in HPV infections means that significant numbers of HIV patients are needing cancer treatment.
One of the best known drugs aimed specifically at colon cancer is Oxaliplatin and its success rates make it more and more popular but there's a sting in the tail and that is permanent and debilitating neuropathy. Once more HIV patients are being faced with unexpected extra problems, something we're long used to but the reality is that neuropathy is the price that sometimes has to be paid for extending your life. This article from sciencedaily.com (see link below) explains the pros and cons of using Oxaliplatin. Once again, a serious discussion with the oncologist, neurologist and hiv-specialist is necessary - don't be palmed off without the facts - in that way you avoid nasty surprises!
Popular Colorectal Cancer Drug May Cause Permanent Nerve Damage, Study Suggests ScienceDaily (Sep. 28, 2011)
Oxaliplatin, a platinum-based anticancer drug that's made enormous headway in recent years against colorectal cancer, appears to cause nerve damage that may be permanent and worsens even months after treatment ends. The chemotherapy side effect, described by Johns Hopkins researchers in the September issue of Neurology, was discovered in what is believed to be the first effort to track oxaliplatin-based nerve damage through relatively cheap and easy punch skin biopsies.
The Johns Hopkins investigators emphasize that the drug therapy clearly improves length of survival in advanced cancer by months to years, and that the goal of their new study is to find ways of preventing or slowing the damage through nerve-protective therapies identfied through simple skin testing.
Many patients who take oxaliplatin report bothersome neurological side effects, including pain in the hands and feet and a numbness or tingling in the throat that affects swallowing, according to study leader Michael Polydefkis, M.D., M.H.S., associate professor of neurology at the Johns Hopkins University School of Medicine and director of the EMG Laboratory and Cutaneous Nerve Laboratory at Johns Hopkins Bayview Medical Center. Though these symptoms develop over time in the majority of patients, some report neuropathies as early as when the drug is first infused.
To get a better sense of how oxaliplatin affects nerve cells, Polydefkis and his colleagues recruited eight cancer patients about to begin oxaliplatin treatment at The Johns Hopkins Hospital. All had been diagnosed with advanced colon cancer.
Before their first oxaliplatin infusion, each patient underwent a comprehensive neurological examination, including nerve conduction testing, a clinical exam to look for signs of nerve damage, and a punch biopsy that removed tiny (3-mm diameter) portions of skin near their knees and ankles. Once oxaliplatin treatment began, consisting of infusions over two days once every two weeks for 12 cycles, the researchers performed the same tests after 30, 90 and 180 days. Another 180 days after they finished with treatment, the patients received one final exam.
Test results showed that each of the patients' nerve function and neuropathy symptoms worsened over time and that results from the punch skin biopsies neatly mirrored the side effect arc. Using a microscope, the researchers saw that nerve cells' long extensions, called axons, degenerated over the course of oxaliplatin therapy. This progression persisted after treatment stopped. Even 180 days after their last doses, seven out of the eight patients' axons continued to wither.
"This drug has rapidly become the standard of care for people with advanced colon cancer, but we really knew little about how oxaliplatin affects nerves over time," he says. "With people living longer lives on oxaliplatin, it's important to know more about these neurological side effects so patients and their physicians can make educated choices on how this drug is used, and perhaps suggest ways to limit the damage."
The new study strongly suggests that punch skin biopsies could be an easy and inexpensive way to follow nerve cell degeneration, a crucial prerequisite for testing the effectiveness of drugs currently in development to trace, prevent or slow nerve damage.
"Skin biopsies can be done pretty easily, uniformly and cheaply anywhere, including hospitals, doctors' offices and clinics, and those places can have the tissue sent to Hopkins for analysis," Polydefkis says. "High-quality neurological testing isn't nearly as easy or economical to do, so it's possible that the biopsies could play a pivotal role in bringing neuroprotective drugs to fruition."
Other Johns Hopkins researchers who participated in this study include Ahmet Z. Burakgazi, M.D., Wells Messersmith, M.D., Dhananjay Vaidya, M.D., Ph.D., Peter Hauer, B.S., and Ahmet Hoke, M.D., Ph.D.
It's not always the easiest subject to bring up in front of your doctor, especially if you're already over 50. However, if you have neuropathic problems, it doesn't have to be an 'It's just your age", diagnosis and can unfortunately be yet another symptom of nerve damage. For HIV-patients, it can be yet another reason why not everything works the way you want it but it is important to report it because science is moving so quickly in the sexual health area and you may well be able to be helped. One important old wives' tale to dismiss, is the fact that this is just a man's problem - not at all, on the contrary, women with peripheral neuropathy are just as likely to experience sexual problems caused by interrupted nerve signals. This article from livestrong.com (see link below) explains clearly why these problems occur.
Sexual Side Effects of Peripheral Neuropathy Jul 12, 2010 | By Matthew Busse
Damage to the nerves of the peripheral nervous system is referred to as peripheral neuropathy. The peripheral nervous system is a network of neurons that connect the spinal cord and the brain to the rest of the body. Peripheral neurons are responsible for transmitting physical sensations, like touch and heat, from the skin to the brain. The peripheral neurons also allow the brain to control many processes throughout the body, such as movement, digestion, heart rate and sexual response. Damage to the peripheral neurons resulting from peripheral neuropathy can cause sexual side effects in both men and women.
Damage to Nerves Controlling the Sex Organs
The sexual organs in both men and women are connected to the brain by peripheral neurons. Sexual arousal occurs when the brain registers an excitatory signal and transmits that signal to the sex organs, explains the Boston University School of Medicine. When the sexual organs receive the excitatory signal, neurotransmitters are released that increase blood flow to the sex organs, causing erections in men and labial, vaginal and clitoral engorgement in women, in addition to stimulation of vaginal secretions. If the nerves that connect to the sex organs become damaged, these signals required for sexual arousal cannot reach the sex organs.
Sexual Side Effects in Men
In men affected by peripheral neuropathy, the neurons that connect the penis to the brain may become damaged. As a result, when the brain experiences sexually stimulating input, it cannot transmit that signal to the penis. An erection results from signals reaching the penis that cause its smooth muscles to relax and allow in increased blood flow. Without the signals from the brain, blood flow to the penis cannot be increased, and there is no erection. However, sex drive in men with peripheral neuropathy may remain unchanged. Alternatively, men with peripheral neuropathy may be able to achieve an erection, but they may experience sexual climax without normal ejaculation.
Sexual Side Effects in Women
Similar to men, women require signal transmission through peripheral neurons between the brain and the sex organs to induce the sexual response. When the brain receives a sexually stimulating signal, that signal is transmitted to the vagina. Similar to men, the signal induces the smooth muscles surrounding the vagina to relax and increase blood flow to the vagina, clitoris and labia. In addition to causing engorgement of these organs, the increased blood flow also stimulates vaginal secretions that lubricate the vagina. Women with peripheral neuropathy may not experience physical sexual arousal, leading to vaginal dryness. Women with damage to the peripheral nerves may also have difficulty achieving orgasm.
Today's post from Leeds University (see link below) shows a 21 minute, UK video for a change. It's a very good quality video which uses real people to show how different people are affected by neuropathic pain and also how the condition is treated. The viewer with neuropathy will instantly recognise and identify with the experiences and treatments of the people shown. The interviews are very clear and easy to understand and the video qualifies as one of the best of its sort. Please don't be put off by the length of the video; it's definitely worth a viewing despite the fact that HIV does not play a role.
There are other posts on the blog concerning autonomic neuropathy (see alphabetical list on the right) but today's article from h-b-f.info (see link below) gives a very good overview of how autonomic neuropathy relates to other neuropathies and other medical problems. It helps you understand why certain things not normally associated with peripheral neuropathy, may lead to a diagnosis of autonomic neuropathy. If you're not sure which nerves are affected by autonomic neuropathy, look at the diagram in the post of Thursday, 27th October.
Autonomic Neuropathy.
Autonomic neuropathy is a medical condition with multiple symptoms, depending on the tissues and organs affected. Autonomic neuropathy is a peripheral neuropathy and involves damage to the nerves supplying the autonomic portion of the peripheral nervous system that innerves the internal organs and blood vessels.
The disease may have an impact on the urinary track, gastrointestinal system, cardiovascular system, sweat glands, sex organs, eyes and nerves that regulate blood pressure. Autonomic neuropathy can also lead to unawareness of hypoglycemia.
Diabetes mellitus is perhaps the most common cause of the disease which is described as diabetic neuropathy. Alcoholism, surgical operations, accidental nerve injuries and anticholinergic medications can lead to autonomic neuropathy, as well. The condition may be accompanied by different forms of neuropathy and it seems to be associated with the Parkinson's disease and multiple sclerosis.
Symptoms of autonomic neuropathy.
Clinically autonomic neuropathy is considered a group of symptoms rather than a particular disease. These symptoms can be unstable blood pressure affected by the position of the body, postural dizziness, fainting, heat intolerance, unexpected or abnormal sweating, urinary incontinence, difficulty to urinate, sexual disorders, swollen abdomen, nausea or vomiting after meals, bloating, diarrhea or constipation and unintentional weight loss.
Not all of the above symptoms are necessary to occur, though.
Consequences and complications of autonomic neuropathy.
Consequences and complications of autonomic neuropathy may vary, since the condition affects a variety of organs and systems.
Unawareness of hypoglycemia due to autonomic neuropathy.
Normally, symptoms such as shakiness, sweating and palpitations occur as blood glucose level drops below 70mg/dL. In people with autonomic neuropathy, symptoms may not occur and hypoglycemia remains unnoticed. It has to be mentioned that other conditions can cause hypoglycemia unawareness too.
Cardiovascular system can be affected by autonomic neuropathy.
Damage to nerves in heart and circulatory system interferes with the body's ability to adjust blood pressure and heart rate. As a result, blood pressure may drop sharply after standing up. This is called postural or orthostatic hypotension and it causes dizziness or immediate loss of consciousness. Damage to the nerves that control heart rate can occur. In such a case, heart rhythm remains high, rather than fluctuating in response to normal body functions and physical activity.
Digestive system and autonomic neuropathy.
Nerve damage to the digestive system often causes constipation due to gastroparesis. The latest is a condition that leads to impaired stomach digestive performance. Severe gastroparesis, which may occur due to autonomic neuropathy, can lead to persistent nausea and vomiting, bloating, loss of appetite and eventually to malnutrition and unintentional weight loss. Excessive vomiting or diarrhea can lead to fluid or electrolyte imbalance such as hypokalemia. Gastroparesis can cause extreme blood glucose level fluctuations, including hypoglycemia due to abnormal food digestion.
Nerve damage to the esophagus may cause dysphagia which is difficulty in swallowing. Apart from gastroparesis, constipation can occur due to damage of the bowel nerves and may alternate with diarrhea, especially overnight.
Urinary track can get affected by autonomic neuropathy.
Diabetic autonomic neuropathy can affect the nerves that control urination and can lead to neurogenic bladder. In such a condition, the bladder retains some quantity of urine, allowing bacteria to grow in the bladder itself and the kidneys. Eventually, persistent urinary tract infections establish. When the bladder nerves are damaged, urinary incontinence may occur, since the individual may not be able to sense the fullness or control the muscles that release urine. Kidney failure can develop because of urine reflux.
Sex organs may present impaired function as a result of autonomic neuropathy.
Neuropathy can gradually decrease sexual response in both genders. A man may get unable to have erections or may reach sexual climax, without ejaculating normally. A woman may suffer a decreased vaginal lubrication, decreased sexual response or orgasm problems. You can find more information in the sexual health section on this site.
Sweat glands may work poorly because of autonomic neuropathy.
Autonomic neuropathy can affect the nerves that control sweating. When nerve damage restrains the sweat glands from working properly, the body cannot regulate its temperature adequately. Nerve damage can also cause profuse sweating at night or while eating.
Eyes can be affected by autonomic neuropathy.
Autonomic neuropathy may affect the eyes, making them less responsive to changes of light. As a result, a person may not be able to see well, when the light is turned on in a dark room or may have trouble driving at night.
Treatment of autonomic neuropathy.
If the cause of autonomic neuropathy can be diagnosed and treated, there is a small possibility for the affected nerves to regenerate. Otherwise, the treatment of autonomic neuropathy itself is supportive and it aims to reduce the symptoms.
The use of elastic stockings, sleeping with the head elevated and the use of medications may reduce postural hypotension.
Medications, small and frequent meals are means that can be used to treat reduced gastric motility.
Manual excretion of urine, occasional catheterization or medications may be necessary for bladder dysfunction treatment.
Medications are used to treat impotence, diarrhea and constipation.
A wide range of drugs are prescribed for medical treatment of diabetic neuropathy.
Prevention of autonomic neuropathy.
Prevention or control of diseases, which may be associated with autonomic neuropathy, can reduce the risk. For instance, diabetics should control blood sugar levels faithfully and alcoholics should seek for help and treatment.
It's very confusing. We all understand that our central nervous system has something to do with the brain or the spinal column but many people are still not sure which nerves affect which part of the body; where they are, or why certain nerves are called peripheral or autonomic and how they all affect our particular form of neuropathy. This diagram is a very simple way to familiarise yourself with the nervous system in relation to neuropathy. A few minutes studying this should make it all clear.
Today's post is a personal story by Andrew from London. It describes how neuropathy dominates his life and poses questions which will be familiar to many other people and deserve to be answered. Unfortunately, as we all know, the combination of neuropathy and HIV is anything but an exact science and there are unfortunately no easy answers. Some people who read his account will recognise some of the problems he is experiencing but there will be relatively few for whom it has become so serious and most will hope that their own situation never reaches this stage. That doesn't help Andrew but his story does help publicise how serious the problem can become. It also highlights the frustration that neuropathy brings; the sense of helplessness in the face of a remorseless disease and that, as Andrew says, "It seems to be a bit of an 'invisible' and poorly understood subject, even though the effects can be very distressing".
Many thanks for getting this resource out on the web. I was alerted to it by Treatment Update which dropped on my doormat this morning.
I must say I have found it very difficult to find any website where experiences and suggestions for alleviating PN pain can be shared. It does seem to be a bit of an 'invisible' and poorly understood subject, even though the effects can be very distressing.
I first noticed numbness in the end of one finger of my right hand about 5 years ago. My HIV doctor suggested it might be caused by a trapped nerve in my neck! I had already been HIV for 23 years by that point, but only on meds for 3 and a bit years, the first 2 years of which involved taking DDI (Videx) as part of my triple combo.
Odd then that I had no PN symptoms whilst taking DDI but it only started in a minor way a year or more after stopping that particular culprit drug.
This is contrary to the oft expounded medical view that stopping a culprit drug should stop the PN!
Since that first minor symptom, my PN has got worse and worse steadily to the point that both my hands are now extremely numb and painful (the paradox of PN) all the way from the tips of my fingers to the middle of my palms. I find myself continuously gnawing and chewing on my fingers both consciously and unconsciously until the skin is raw and broken, I presume due to some instinct to try and stimulate feeling or circulation. The best way to try and explain the sensation in my hands is - imagine your hands have been amputated and then reattached - the burning, aching and throbbing results from the trauma and damage to severed nerves, the numbness from severed nerves not being fully reattached or healed.
Why do I have such painful and damaged hands (in relation to the PN in my feet) when the conventional wisdom on PN suggests feet are worst affected? (PN is supposed to decay the longest nerve fibres in your body at their periphery first, hence those running down to your feet; those running down your arms to your fingers should be relatively less affected).
Why do I still have steadily deteriorating PN when my HIV is stable and controlled (undetectable in blood tests for the last 8 years), and I have not taken any implicated drugs for over 6 years?
Your description of PN in the feet as being like walking on the bare bones with no fat or muscle on the soles to cushion the impact is exactly how I described it to my doctor. Fortunately this pain can be mitigated by keeping off my feet as much as possible and wearing soft cushioning footwear. Keeping the feet raised by either lying in bed or in a recliner chair with feet raised on a footstool also makes them much more comfortable than standing or sitting normally with feet down on the floor, which only exacerbates the throbbing and aching sensations.
As it has progressed, PN has also started to affect other parts of my body - my thighs are now extremely sensitive to the lightest touch - trousers or jeans brushing on my skin as I walk feels like sandpaper being rubbed on burnt skin, for example.
PN may also be implicated in the muscle stiffness and pain (fibromyalgia) which finds me crawling out of bed in the morning barely able to move due to the aching stiffness. This has also caused me to attend hospital.
I have tried to include as much useful information as I could without rambling on endlessly because I wanted others to be able to share a little of my experience of living with neuropathic pain and the way doctors have dealt with it.
It's very strange that there are so many hiv+ gay men in London and the UK but no-one ever mentions their problems with neuropathy. HIV viral load, Hep C etc yes, but not a murmur about the difficulties of living with PN and trying to manage the pain.
It does make it a very lonely illness. You feel, "is it only me?"
Even living with a partner doesn't help much, as they cannot see anything visibly wrong with you so keep forgetting that you are in distress from the never ending pain. So frustration and short-tempered-ness are often order of the day.
It's just a shame that there isn't much in the way of treatment that really works to stop the pain at source. Or to get the feeling back into these horribly uncomfortable 'wooden' digits.
The argument drones on but a successful outcome for chronic pain sufferers does seem to be getting nearer, especially after the results of yet more tests on the efficacy of cannabinoids as a neuropathic painkiller. Today's post comes from Genetic Engineering & Biotechnology News (see link below). There are other posts about how useful marijuana is for our health group (see list on the right) but this one is very clearly written and explains the situation in America at the moment. Of course, medical marijuana is already legal in various countries and states, or regions within countries but it's almost never a matter of course that it will be prescribed for you. It's been proved to be one of the very few effective neurological pain controls and is of great value to many neuropathy sufferers - the chance to be able to take advantage of its benefits, seems a no-brainer!
Medical Marijuana Policy Catches Up with Science Bruce Mirken
Shifting Stance on Herbal Medicine by Government and Physicians Benefits Patients
Marijuana’s recorded use as a medicine goes back nearly 5,000 years. The ban on such use is a much newer phenomenon—72 years in the U.S., a bit more or less in other nations and in specific U.S. states—and one whose unhappy tenure is now apparently near an end. Simply put, research has made that ban increasingly untenable.
The two clearest signals of the sea change that is occurring came this past fall. In October, the Obama administration signaled a careful but hugely significant softening of the federal government’s dogmatic hostility toward medical marijuana. Instead of treating state medical marijuana laws either as nullities or as affronts to be attacked any way possible, a memo from the Department of Justice signaled a hands-off policy toward medical marijuana activities when such activities are clearly permitted by state law.
Less than a month later, the American Medical Association (AMA)—the largest and most institutionally conservative U.S. physicians’ group—announced a major reversal of its policy on the issue. The AMA’s old language had urged that marijuana “be retained in Schedule I” of the federal Controlled Substances Act. That classification deemed marijuana as having a high potential for abuse, lacking accepted medical uses in the U.S., and as unsafe for use even under medical supervision.
In contrast, Schedule II—still considered to have high abuse potential but declared to have accepted medical uses and to be safe for use under physician supervision—includes cocaine, morphine, and even methamphetamine. Stranger still is the fact that in pill form, THC—the component responsible for marijuana’s “high,” though not all of its therapeutic effects—is in Schedule III, with controls so mild that phoned-in prescriptions are allowed.
Some of us thought this classification of marijuana was ludicrous from the get-go, but a recent succession of controlled clinical trials has made the case irrefutable. And the AMA has noticed, replacing its old position with this: “Our AMA urges that marijuana’s status as a federal Schedule I controlled substance be reviewed with the goal of facilitating the conduct of clinical research and development of cannabinoid-based medicines and alternate delivery methods.” While carefully avoiding an endorsement of existing state medical marijuana laws, the new AMA stand represents a major shift.
The report accompanying the new policy makes clear that this shift was driven by research into medical marijuana, some of the most interesting of which has looked at marijuana for neuropathic pain. This type of pain, stemming from nerve damage that can be caused by a wide variety of illnesses (including HIV/AIDS, multiple sclerosis, and diabetes) and injuries, is notoriously hard to treat. Standard pain drugs, even opioid narcotics, often provide incomplete relief at best. Sometimes anticonvulsant drugs such as gabapentin can be helpful, but some patients do not respond or cannot tolerate these medications. The need for better treatments is universally recognized.
Trial Results
The first human trial of marijuana for HIV-associated neuropathy, conducted by Donald Abrams and colleagues at the University of California, San Francisco, was published in Neurology in February 2007. Abrams compared smoked marijuana to placebo (marijuana with the cannabinoids removed) in patients who had a chronic pain score of at least 30 on a 100-point scale. The first marijuana cigarette reduced pain 72%, compared to just 15% with placebo. No serious adverse events were reported, and while some experienced the side effects one would expect (like dizziness or disorientation), these were mild enough that the researchers concluded that they “do not represent any serious safety concerns in this short-term study.”
A second HIV neuropathy study, out of UC San Diego and published in 2008 by Neuropsychopharmacology, focused on patients for whom at least two classes of analgesic drugs had failed. Again, smoked marijuana was, as the study concluded, “generally well-tolerated and effective... cannabis was associated with a sizeable (46%) and significantly greater (vs. 18% for placebo) proportion of patients who achieved what is generally considered clinically meaningful pain relief.”
A third University of California study, also published in 2008, found smoked marijuana effective for relief of neuropathic pain from a variety of non-HIV causes, including multiple sclerosis and spinal cord injury. Notably, the researchers explained, “cannabis does not rely on a relaxing or tranquilizing effect (e.g., anxiolysis), but rather reduces both the core component of nociception and the emotional aspect of the pain experience to an equal degree.”
Meanwhile, a 2007 Columbia University study, published in the Journal of Acquired Immune Deficiency Syndromes in August 2007, compared relatively weak marijuana (2.0 or 3.9% THC) with relatively high doses of Marinol (dronabinol), the prescription THC pill. Margaret Haney and colleagues compared the drugs’ effects on a variety of parameters, including caloric intake, weight, mood, sleep, and cognitive performance.
The pill was administered at five or 10 mg four times a day, four or eight times the standard dose for appetite stimulation.
Both treatments were rated as effective, but the 3.9% THC marijuana outperformed even the highest dose of dronabinol at stimulating hunger/desire to eat, increase in daily caloric intake, sleep duration, and in patients’ self-rated quality of sleep. The researchers also tracked patient requests for over-the-counter medications to treat nausea, diarrhea, and upset stomach, and both marijuana and dronabinol reduced these to almost zero. Strikingly, the article notes no effect on patient performance on a series of tests used to measure psychomotor or cognitive functioning: “Compared with placebo, neither marijuana nor dronabinol significantly altered performance on any of the tasks.”
As Dr. Abrams has been known to observe, it’s not surprising that an herbal medicine that’s been safe and effective for 5,000 years is still safe and effective today. But as the evidence piles up in favor of this natural plant product, the pharmaceutical industry is energetically pursuing its own versions of cannabinoid medicines.
Some, such as GW Pharmaceuticals’ Sativex, are made from the plant, while others are synthetic single cannabinoids. No doubt Western medicine’s preference for single chemical entities—along with politicians’ continuing desire not to recognize anything good about marijuana—will exert a powerful pull in favor of prioritizing these new pharmaceutical products over the plant.
And maybe, someday, Big Pharma will produce a synthetic cannabinoid medicine that works better than Marinol, which is unloved by patients. At that point, the policy question will be this: Is it appropriate for government to push customers toward expensive pharmaceutical products, when many can get adequate and safe relief from a plant they can grow in their own backyard?
The right answer is obvious. What will happen in the real world is less so.
Today's post from EATG: the European Aids Treatment Group, (see link below)is based on a study of 1,539 HIV-patients by the University of California. It reveals much of what most of us already know but interestingly also, the fact that a high CD4 cell count (which we all use as a measure of immune system health) can be a possible cause of neuropathic pain. Not really what we want to hear when we're spending every waking minute trying to boost that very cell count. The article suggests that it may be a consideration when deciding whether to start anti retroviral treatment in the first place. Considering that the current thinking is that it's better all round, to start as soon as possible, the dilemma is obvious. On the other hand, there's not really much of a choice is there? The medication which halts viral development is more or less essential and for some people, the pain may be an unwelcome but necessary by-product.
Debilitating HIV-associated sensory neuropathy remains common 20/05/2010
Debilitating sensory neuropathy remains prevalent in HIV-infected patients, despite a general decline of neurological complications with use of combination antiretroviral therapy.
This finding is from a study in which the researchers tested 1,539 HIV-infected individuals for clinical signs of neuropathy and neuropathic pain.
"We were surprised by the high prevalence," lead author Dr. Ronald Ellis of the University of California, San Diego, told Reuters Health by e-mail.
"Painful neuropathy frequently persists and requires ongoing management," even when antiretroviral therapy has reduced viral load and restored immune function, he said.
In the May Archives of Neurology, Dr. Ellis and colleagues report that 881 patients (57.2%) had HIV-associated sensory neuropathy, and 335 of those 881 (38.0%) had neuropathic pain.
"Neuropathic pain was significantly associated with disability in daily activities, unemployment, and reduced quality of life," the investigators say.
Patients currently taking combination antiretroviral therapy had an adjusted odds ratio of 1.60 for clinical signs of sensory neuropathy, compared to past users or never users of antiretroviral combinations.
Age (aOR 2.13), past use of stavudine, didanosine, or zalcitabine (aOR 1.95), and lower CD4 nadir (aOR 1.16) were also associated with sensory neuropathy.
Paradoxically, neuropathic pain was associated with a higher CD4 nadir, as well as with past use of stavudine, didanosine, or zalcitabine.
In an editorial, Drs. Dennis Kolson and Francisco Gonzalez-Scarano, both of the University of Pennsylvania in Philadelphia, said the "association between neuropathic pain and a higher CD4 nadir suggests that a functional immune system may contribute to the induction of pain." They also suggest considering the risk of neuropathy - and the disability that results -- when deciding whether to start antiretroviral therapy.
Regarding potential for peripheral nerve regeneration and recovery, Dr. Ellis told Reuters Health, "It may be that treatments can be designed to enhance regeneration. Alternatively, we may find that earlier HAART therapy using agents without neurotoxicity can protect individuals from developing neuropathy in the first place."
Today's post from Poz.com (see link below) returns to Capsaicin (see other articles in the list on the right) because of some important news regarding official approval of Qutenza patches for the treatment of neuropathic pain. The article is particularly interesting for North American readers because as is mentioned, the patches are already available in some parts of Europe (by no means all, as is suggested). For those people who have already been using capsaicin cream, they should be aware that Qutenza is a whole different ball game. For a start, it contains 8% capsaicin whereas, the standard creams contain much less. For that reason, one application (under supervision) of 30 minutes can bring weeks of relief. This is in stark contrast to the normal creams which can be applied every day (with all the associated hassle - those who have licked their fingers, or rubbed their eyes after applying capsaicin will know what I mean!). Worth talking to your doctor about trying it but as with everything else, what works for some, has no effect on others.
HIV Neuropathy Pain Patch Reaches for FDA Approval
An application supporting approval for a skin patch containing the chili pepper–derived chemical capsaicin to manage HIV-associated neuropathy pain has been submitted to the U.S. Food and Drug Administration, according to a news release from NeurogesX, a pharmaceutical company based in San Mateo, California.
The patch, called Qutenza, is already approved by the FDA for managing nerve pain associated with shingles outbreaks, and it is also available in Europe for the treatment of pain related to diabetic neuropathy.
Chili peppers and mustards have been used for centuries in topical balms to treat chronic pain. Only during the past few decades, however, have scientists figured out how capsaicin—the chemical that gives chilies their pungency—works as an analgesic: It depletes a neurochemical called substance P responsible for transmitting pain.
NeurogesX has spent several years testing capsaicin in skin patches to treat a variety of chronic pain conditions. Qutenza is a skin patch made up of a gel containing 8 percent capsaicin.
The application submitted to the FDA calls for Qutenza to be applied for 30 minutes in a single application to help manage the pain stemming from HIV-associated peripheral neuropathy.
Data in support of NeurogesX’s application included the pooled results from two clinical trials, originally presented in March at the annual meeting of the American Academy of Pain Management. Analyzed together, both studies showed that Qutenza relieved HIV-related neuropathy pain by about a third.
The studies compared 239 people who received a single application of Qutenza with 99 people who received a single application of a control patch containing only 0.04 percent capsaicin.
The researchers found that those receiving Qutenza had a 27 percent decrease in their neuropathy pain compared with a 15.7 percent decrease in those who received the control patch. The improvement was highly statistically significant, meaning that the difference between Qutenza and the control was too large to have occurred by chance.
What’s more, when the researchers looked at those who received a higher degree of pain relief—a 30 percent or more reduction in pain scores—36 percent of those on Qutenza saw this higher level of relief compared with 22 percent on the active control.
According to NeurogesX president and CEO Anthony DiTonno, who is quoted in the news release, an approval “would be particularly meaningful as the treatment of [HIV-associated peripheral neuropathy] represents a significant unmet medical need in the HIV community. Currently, no FDA approved drugs are available to treat this complication.”
Vitamine B12 in it's various forms, has long been seen as a necessary tool in fighting the worst of neuropathy; or put another way... a deficiency of B12 can cause neuropathic problems. The latter is probably more important an interpretation than the former because if your B12 levels are normal to better than normal, it's questionable if you need to supplement them even more with extra pills. Adjusting your diet to include some of the foods mentioned below, may be enough. This article from livestrong.com (see link below) addresses the issue as it applies to HIV patients.
Vitamin B-12 for HIV Neuropathy Jul 21, 2011 | By Emma Roberts
Overview
Neuropathy occurs regularly in HIV infection. According to University of Chicago Center for Peripheral Neuropathy, nerve damage affects nearly a third of patients diagnosed with HIV, and peripheral neuropathy can manifest at early stages of the disease as well as advanced stages. Neurological problems represent one of the most common symptoms of vitamin B-12 deficiency, and in HIV patients, vitamin B-12 deficiency occurs frequently, often as a result of malabsorption from food. If you have HIV neuropathy, speak to your doctor about vitamin B-12 supplementation as a potential complementary treatment.
Deficiency
Vitamin B-12 deficiency occurs often in HIV patients. Researchers have not yet discovered a definitive reason why this deficiency occurs, according to Dawn McGuire, M.D., of University of California San Francisco. Possible hypotheses include malabsorption of nutrients. According to a March 2002 study conducted by researchers from the Albert Einstein College of Medicine and the Beth Israel Medical Center, HIV and AIDS patients display abnormalities in the metabolic pathways responsible for absorption of vitamin B-12. The results of this study were published in the journal "Neurology."
Symptoms
Symptoms of HIV neuropathy and vitamin B-12 deficiency share many similarities, including weakness, numbness and tingling. HIV patients with neuropathy typically experience pain, numbness, prickling, stiffness, tingling and burning in the soles of the feet as well as the toes. HIV neuropathy also affects the hands in some cases, and causes loss of feeling, numbness and tingling. In more rare cases, HIV neuropathy causes loss of bladder and bowel control and dizziness.
Sources
Liver remains one of the best sources of vitamin B-12, according to the National Institutes of Health Office of Dietary Supplements. One slice of liver contains 48 mcg of vitamin B-12, which is 800 per cent of the recommended daily intake. Other good sources of vitamin B-12 include clams, trout, salmon, beef, poultry, haddock, yogurt, tuna, milk, cheese and eggs. For vegetarians with HIV, good sources of vitamin B-12 include fortified breakfast cereals and nutritional yeast.
Treatment
Antiretroviral medications demonstrate some positive impact in the alleviation of HIV neuropathy, according to recent research. A February 2004 study conducted by Brooke Army Medical Center researchers and published in the "International Journal of STD and AIDS" found that antiretroviral medication boosted vitamin B-12 levels in HIV patients. Doctors also often recommend Vitamin B-12 injections, particularly in cases where malabsorption of vitamin B-12 is suspected.
As promised yesterday, today's post deals with exercise as a means of relieving neuropathic problems. In the past it was not advised to exercise too much (especially weight bearing exercise) because of the risk of exacerbating various neurological problems. However, more and more specialists now believe in the old adage that, 'if you don't use it, you lose it!' and therefore, advise that it's important to keep your muscles and joints in the best shape possible to avoid atrophy and further invalidity. All well and good for some but I can hear the groans of those for whom every movement is torture and the idea of subjecting your anaesthetised, or painful feet to exercise regimes seems to be just asking for falls and broken bones. It seems reasonable therefore to say, that you must tailor your exercises to your own ability at any given time - you can only do what you can do - but you should at least try the best you can. It's logical that the weaker your muscles and joints become through lack of action, the more restricted your life's going to be.
The article comes from the same source as yesterday; Grandtimes.com (see link below) and refers once again to the book, 'Numb Toes and Aching Soles' by John A.Senneff.
Numb Toes & Aching Soles
PERIPHERAL NEUROPATHY by John A. Senneff
Coping with Peripheral Neuropathy
It may not be possible for us to feel like we once did before we got stuck with this atrocious ailment— at least not yet, not until some true cure comes along— but there is much we can do now to improve the quality of our lives.
Benefits of Exercise
Most clinicians think the benefits of exercise stem largely from the improvement in blood circulation it produces. This improvement permits oxygen to be carried to various parts of the body (including nerve tissue) where it's needed most. Also a good exercise program will almost inevitably lead to a loss of weight— a desirable goal in itself for most people and one which is believed especially important for people with neuropathy. In any event, as one PNer said plaintively : "At least one good thing about weight reduction is there is less of you to hurt."
Of course beyond any particular PN benefits, there are a number of general health boons from exercise. These include the reduction of low density lipids (LDLs) and triglycerides, the increase of favored high density lipids (HDLs), and the lowering of blood pressure. David C. Nieman, professor of health and exercise science at Appalachian State University in Boone, North Carolina, also points out that moderate daily exercise can boost the body's immune system.
I found one formal study on the value of exercise to PNers. As reported in the October 1997 issue of Physical Therapy, 28 subjects with peripheral neuropathy between the ages of 23 to 84 were followed through a six week period during which half completed a home exercise program. Dr. Richard K. Shields, a professor in the Physical Therapy Graduate Program at the College of Medicine, University of Iowa, was the principal investigator in the study.
Subjects were given stretching bands to exercise the upper body, gradually increasing resistance, with a goal of 10 daily repetitions. They also were instructed to exercise aerobically up to 20 minutes each day, either by walking or bicycling, with enough intensity to achieve a heart rate of 60 to 70% of their estimated maximum heart rate (220 minus their age).
Study conclusions were based on impairment measures which included average muscle scores, handgrip force, walking time and "forced vital capacity." A health survey was also used which dealt with quality of life perceptions.
At the end of the six week period those in the exercise group showed moderate improvements in their strength impairment measures, as could be expected. What was noteworthy were the significant improvements reported in the quality of life surveys. Exercise participants indicated on average a meaningful change in "physical and mental role limitations" (self perceptions of physical and mental disabilities) and "social function limitations" (self perceptions of interference with normal social activities). The study did not, however, demonstrate any overall pain reduction for those participants. From an analysis of the results Dr. Shields concluded that a home exercise program should be an important component of treating people with peripheral neuropathy.
I think the message from this study is that, apart from any direct physical benefits (which can be significant), exercise makes us feel better about ourselves, that perhaps we figure we are not quite as hobbled by our PN as we previously thought, that we look better, have more energy, are generally healthier and happier, etc.
Types of Exercise
Of the various forms of exercise, most PNers seem to agree water aerobics (such as running in deep water while wearing flotation devices) or simply swimming laps, or a combination of the two, is best since it takes the weight off of painful feet while you're exercising. Also it's easier to stretch and work muscles in the water. If you prefer to exercise in the shallower end of a pool you might consider buying a pair of water shoes to give your feet some protection and traction. (Occasionally people simply use old tennis shoes for this purpose.) To get the full benefit of any water workout it's suggested you spend at least 30 minutes in a pool, daily if possible but at least several times a week.
If our feet can handle walking— the faster the better— that also is an excellent form of exercise. Unfortunately running or jogging must remain a memory for most of us who used to enjoy those pursuits. A treadmill provides much the same walking experience but under controlled conditions. (I used to have one but my feet couldn't take it anymore.)
The Stair Master is a step removed (no pun intended) from walking. This machine eliminates the foot impact of walking— though it can still put stress on your feet as you push down. I personally prefer a machine called the Precor, where you slide your legs back and forth in a gliding motion while your feet are planted on "skis." With the Precor you can increase the resistance or raise or lower the height of the ski tips on the control panel. Another so-called elliptical machine is the Body Trek which involves the use of arms as well as legs.
Easier on the feet yet are exercise bikes. A type many favor, me included, are recumbent models where you plop yourself in a "chair" and pedal while sitting back with your legs pumping horizontally. You can read, watch TV or just listen to music, all while getting a great workout.
Many PNers also use strength-building routines such as weight lifting. Well equipped fitness centers offer all kinds of equipment for this purpose.
Physical therapy experts maintain that gradual stretching and strengthening exercises help relieve the stress of chronic pain. An organization called Stretching, Inc., has a web site (www.stretching.com) offering various helpful books on stretching and body building techniques. Incidentally it is always a good idea to have a trained physical therapist formulate your exercise program.
One other form of exercise some PNers use is the Chinese martial arts routine called tai chi. This is a training exercise involving slow, graceful movements such as seen performed in Chinese parks early in the morning. These movements are derived from the movements of animals and follow a natural, relaxed pattern. They increase the body's motion range and are said to exercise the internal organs. (Don't ask me how.) According to practitioners the slow meditative routine aids relaxation, stress reduction, balance and posture, and increases blood flow.
Diabetic PNers are again reminded to check with their physicians prior to engaging in exercise programs.
With a blog like this, it's inevitable that many people will stumble across it at the start of their neuropathy symptoms or problems. Detailed and specific posts about particular forms of neuropathy and/or its treatment aren't much use to those people because they just want to know what it's all about. For that reason, every now and then, it's important to post an article that gives a general description of the disease Neuropathy. This article from Grandtimes.com (see link below)referring to the book 'Numb Toes and Aching Soles' (reviewed elsewhere on the blog), does exactly that and gives a clear introduction to neuropathy as a whole.
Tomorrow, the post will be the second part of the same useful article which talks in detail about the value of various forms of exercise for neuropathy patients.
Numb Toes & Aching Soles
PERIPHERAL NEUROPATHY by John A. Senneff
Introduction to Peripheral Neuropathy
Millions in this country and elsewhere have peripheral neuropathy in different forms and to various degrees. The number usually cited in the U.S. is two million. Yet a study of its incidence just among specific population groups, for example among people with diabetes or with HIV infections, would suggest a much larger number.
It can strike any age group in any social or cultural strata. Many, perhaps most, victims do not realize what ails their aching soles and numb toes, as well as their tingling fingers, throbbing hands or weakening muscles. The shame of this is that without early action based on knowledge of their afflictions, the pain and other symptoms experienced by these sufferers almost invariably gets worse. Moreover their neuropathies often tend to advance in their bodies, causing more and more areas to be affected. Another problem is that if attention is delayed certain neuropathies can become more difficult to treat.
Symptoms and Effects
Symptoms of sensory neuropathies, which may gradually occur over many months, often include numbness of the affected members, burning, tingling sensations, "electric" shocks, aching pain and extreme sensitivity to touch.
Motor neuropathies frequently result in weakness in the feet, ankles, hands and wrists. Diarrhea, light-headedness or sexual dysfunction are some of the possible consequences of autonomic neuropathies. In severe cases involving these neuropathies, activities such as walking normally and sleeping may be nearly impossible.
In rare situations even respiratory failure or paralysis may occur with certain neuropathies such as Guillain-Barre syndrome.
Causes
There are said to be more than 100 causes of peripheral neuropathy. Diabetes is considered the most common, at least in the United States. It is variously estimated that 30 to 65% of people with diabetes have PN to some degree. In this group it is especially prevalent among those having particular difficulty in controlling their blood glucose levels and/or those having high lipid levels (cholesterol and triglycerides), those over 40 and among smokers.
PN also is said to cause pain for up to one third of people with AIDS or HIV. In fact it is thought to be the most frequent neurologic disorder associated with HIV infection, typically occurring in the later stages of the disease.
Various toxins and metallic poisons (such as arsenic, lead and mercury), certain chemicals (especially solvents and some insecticides), excessive alcohol intake, vitamin deficiencies (particularly B12) or vitamin excesses (B6), nutritional imbalances, and a number of drugs used to treat HIV infections and AIDS can all cause peripheral neuropathy. It can also result from kidney failure, liver disease, rheumatoid arthritis, abnormal blood proteins, cancer (and even cancer chemotherapy), leukemia and shingles.
Certain repetitive activities such as typing can also be the cause of some neuropathies. Carpal tunnel syndrome is one example. This is a so-called entrapment neuropathy— a condition resulting from a nerve lesion at a point where the nerve is confined to a narrow passageway. Another instance of entrapment neuropathy is where restrictive clothing compresses a nerve called the lateral femoral cutaneous nerve which runs from the groin to the upper thigh.
A tendency toward peripheral neuropathy can also be inherited. A family history of the disorder increases the likelihood. In a different twist on inherited susceptibility, a study done in France in 1995, reported in the November 1995 issue of Alcohol and Alcoholism, suggested a relationship between a history of alcoholism in a father and peripheral neuropathy in his alcoholic offspring. Ninety alcoholics, some with neuropathies and some without, were included in the study. The investigators found neuropathies occurred in alcoholics five times as often when the father was an alcoholic himself than when he was not. (Unfortunately, the study did not consider the incidence of PN in the alcoholic fathers, raising the obvious question whether perhaps it was the PN itself which was inherited rather than a greater disposition to neuropathy simply because of The publication Bio Medical Frontiers reports that the cause of one third of all neuropathies is unknown— mine included. These cryptogenic disorders are called "idiopathic." Some clinicians believe many of these unexplained cases are really genetic in origin.
Incidentally, I discovered that not only does my neuropathy have a name— idiopathic— it has a number. Under the International Classification of Diseases- a world-wide system which groups related diseases and procedures for reporting statistical information— idiopathic neuropathy is code 356.8. A word of advice: if you happen to be idiopathic and are ever doing a slow shuffle down the street, having a particularly bad day with your PN, and somebody annoyingly asks what's wrong with you, you can be sure they won't stay around too long if you say "I've got the 356.8 disease."
Having posted an article about Turmeric and its basic constituent, Curcumin, some time ago on the blog (see alphabetical list on the right), I decided to try it out, having first checked it against my HIV meds. As a natural-born cynic, I didn't hold out any great hopes but to my surprise, two weeks after taking two 400mg capsules a day, I noticed a distinct lessening in the tingling, numbness and pain in my feet and legs. I finished the bottle and then forgot to buy a new one - again, within two weeks, the pain and other symptoms were back with a vengeance. Coincidence? Maybe; it's difficult to know in our HIV world, where you're taking this, that and the other, for this, that and the other, what's improving or worsening what! That said, I bought another bottle of Curcumin and resumed the 2x400mg dosage per day and once again, within two weeks, I noticed a distinct improvement in my symptoms but that's just me and we all know how neuropathy works - something may help you but for someone else it does nothing! I'd like to hear about other people's experiences with the same thing. There is very little verified scientific research and evidence on the internet, so personal experience is invaluable.
Turmeric is claimed to be a wonder spice, helping with all sorts of ailments from cancer to Alzheimers but we've heard that all before and need firm evidence to support the hype. One thing is sure; it's a powerful anti-oxidant but further than that, nobody seems to know why it works well in helping with various ailments. This article from Buzzle.com (see link below)is written by an Indian lady who doesn't seem to have medical qualifications (not necessarily a problem) but writes about Turmeric (curcumin) with authority and her facts certainly check out with other sites. She ends by saying: "I rest my case here, having made and proved my point." I'm not sure that she has but she makes a persuasive case.
Turmeric for Neuropathy By Ishani Chatterjee Shukla
Last Updated: 7/28/2011
Neuropathy, which means a damage to the nerves, can cause a lot of pain, regional hypersensitivity and overall physical discomfort in a person. Peripheral neuropathy is caused by damage to the nerves of the peripheral nervous system and such damage is either a result of an underlying disease or illness or is a consequence of physical trauma or injury. While most of the mainstream treatment measures undertaken to relieve neural discomfort work on a symptomatic basis, certain alternative treatments and therapies have proved to be more effective in alleviating the underlying neural abnormalities.
While most of us are familiar with the efficacy of various herbs and natural spices in curing and treating a lot of physical ailments, I am sure most of us would be surprised at the idea of these very herbs and spices being able to treat something as complex as an ailment or injury of the nerves. Turmeric is one such natural spice that seems to be quite effective in dealing with peripheral neuropathy - mind you, it doesn't just alleviate the pain and sensitivity but corrects the neural damage to a large extent! The reason behind the efficacy of treating neuropathic pain with turmeric can be traced to a very significant chemical compound, curcumin, that turmeric contains. The following segment provides an elaborate insight into facts about using turmeric for neuropathy.
Turmeric for Peripheral Neuropathy
The fact that turmeric works as a great pain reliever and anti-inflammatory agent is not an unknown one. Remedies like turmeric milk are used in a lot of exotic ethnic cultures to accelerate the healing of wounds and to provide relief from fever and bacterial infections. So, what is it about turmeric that gives it all these medicinal properties? Well, as mentioned in the previous segment, it's a chemical compound called Curcumin. Curcumin is a naturally occurring polyphenol. Natural polyphenols are a group of organic antioxidants that have great beneficial effects on the body when consumed. Laboratory research and experiments have proved beyond doubt that curcumin has very potent anti-inflammatory, antibiotic and anticarcinogenic properties. Indeed, the traditional medicine systems of many Oriental cultures (such as China, India, etc.) do maintain that regular use of turmeric and other spices containing curcuminoids (such as ginger) in daily cooking is a great way to keep various types of cancers and tumors away.
Now, the question is, how does curcumin cure neuropathy? How does it treat or heal damaged nerves? Well, while the anti-inflammatory and analgesic properties of turmeric do contribute towards providing symptomatic relief, the antioxidant properties of curcumin are believed to slow down and reverse neurodegeneration. In a study conducted by the UCLA Center on Aging during the latter part of the 20th century, the researchers were able to successfully demonstrate the efficacy of curcumin in reducing neural degeneration, plaque deposition in the brain, damage to neural tissues due to oxidation, etc. All these findings indicated towards the fact that curcumin and its derivatives can be used as a potential treatment alternative for neurodegenerative conditions such as Alzheimer's disease.
So, if curcumin can be a possible curative agent of a neurodegenerative condition as complex and serious as Alzheimer's disease, it definitely makes sense that turmeric may be used to effectively treat the symptoms as well as underlying neural damage that characterize peripheral neuropathy. Therefore, the possibilities of success involved in the use of turmeric for neuropathy treatment and neural pain relief cannot and should not be ruled out. So, the next time you embark upon preparing that exotic curry dish, do not miss out on sprinkling a couple of pinches of turmeric - besides the great color and exotic aroma, you'll benefit greatly from its antioxidant properties. I rest my case here, having made and proved my point.
You have survived the onslaught; the virus is undetectable; your immune system seems to be working well with a high T-cell count and you're getting older much like the rest of the population...but are you ageing just like everyone else? The answer may be no...you may be ageing differently and if you're suffering from neuropathy, you're already noticing one of the many possible differences. This informative article from The New York Buyers Club blog (see link below) doesn't make easy reading and true, they are a commercial organisation selling supplements and promoting alternative therapies but they've proved themselves to be serious researchers regarding HIV and have a genuine interest in the wellbeing of HIV patients as a whole. In the end 'caveat emptor' (let the buyer beware) always applies and you must make your own decisions but although this blog makes a point of never advertising on behalf of others, serious articles from the New York Buyers Club can be seen as exceptions.
Aging With HIV Posted on April 24, 2011 by admin
Unique Health Concerns Can Arise – Even When Meds Keep the Virus “Undetectable”
When effective antiretroviral therapy (ARV) came on the scene in the mid-90s, it brought up a new topic for people with HIV: growing old. By now it is generally agreed that ARV therapy offers the opportunity for a “normal” life span. Yet no one denies that unique health concerns can arise for people with HIV as they age, even when the meds keep the virus “undetectable.”
Start with the gut. In the gastrointestinal tract, HIV infection results in malabsorption (poor digestion of nutrients) while also damaging the gut lining and allowing inflammatory products to spill into the bloodstream, spreading both virus and inflammatory responses.
Then there’s the lymph system and the immune system in general. Here, HIV damages lymph nodes and accelerates shrinking of the thymus gland, which you can think of as the training center for the immune system’s T cells. Some types of T cells begin to disappear, while others behave abnormally in a 30-, 40-, or 50-something HIV+ individual, responding to disease more as one would expect in an 80- or 90-year old.
Still other types of HIV-motivated aging affect the heart, veins, and arteries (cardiovascular system), and the brain and nerves (central and peripheral nervous systems).
The effects of these changes may include: increased risk of heart attack and stroke, neuropathy, cognitive problems (like forgetfulness), bone, kidney and liver disease, and increased risk for certain kinds of cancer (non-Hodgkin’s lymphoma, rectal and cervical cancer, and liver cancer).
Furthermore, while ARV drives down peripheral blood levels of HIV, it is accompanied by toxicities that do particular harm to the energy factories of cells, the mitochondria. Mitochondrial toxicity (which NYBC and its predecessor, DAAIR, have long been concerned with) underlies a number of clinical issues, including gut damage, muscle, liver and bone damage, as well as peripheral neuropathy and pancreatitis.
Add to that, infections may now cause bigger problems. This is starkly evident with the human papilloma viruses (HPV), leading culprits in rectal and cervical cancer. Similarly, pre-existing chronic hepatitis B or C infection makes the liver even more vulnerable, and can also increase risk of autoimmune disease, in which the body’s defenses attack its own tissues. The family of herpes viruses that can cause CMV or KS also contribute to the inflammatory milieu
Testing to stay ahead of problems…
Your blood work looks not only at the prime suspect, HIV, but also scans a whole array of markers, indicators of a range of potential problems. That’s why we recomend you should always take home a copy for yourself. Often, physicians will see that some markers are out of normal range, but have limited tools in their drug arsenal to manage them; they may be ignored. Still, some obvious signs of trouble crop up with routine testing.
Bad cholesterol (LDL) that’s high and good cholesterol (HDL) that’s low, together with rising triglycerides, point to risks to the heart. High sensitivity C-reactive protein (hsCRP) is another, more recently developed, test for cardiovascular trouble in the making. Liver enzymes and markers of liver function such as ALT, AST and gamma-glutamyl transferase (GGT) may be elevated, indicating need for attention to that organ. CPK when elevated can indicate kidney damage, an effect that may arise from tenofovir-containing regimens or from statin drugs. Elevated glucose suggests insulin resistance, a precursor to diabetes.
Some good news—plus, ways to keep the news good
The good news is that not everyone suffers these problems. Indeed, some stay healthy or have only minor issues. But we don’t advise resting on your laurels — any more than we suggest ignoring warning signs on the horizon.
One of the best ways to thwart HIV and medication side effects is to change your life: exercise, aerobic and resistance, not only sustains health but yields a stronger body to bear insults. You can also make better food choices, minimizing your intake of the toxic sludge peddled to us by Big Agribiz in the form of processed foods, fast foods, sodas and other products that aren’t really food. It is up to us to live our lives the way we want and to make the best choices we can, moment to moment. (Be here now, as the great meditators say!)
And there are specific ways to combat the ravages of time, HIV, and meds. Start with the gut: along with good food and drink, a multivitamin is essential. Probiotics like acidophilus, bifidus, and S. boulardii have shown their benefits. Consider a small amount (1-3 g) of glutamine daily to help gut turnover. If needed, use digestive enzymes.
For the heart, muscles, lungs, liver—and to help cells themselves function well–evidence of the benefit of N-acetylcysteine (NAC) keeps growing. By replenishing the body’s vital antioxidant glutathione, NAC offsets harm caused by all sorts of inflammation.
Do consult NYBC’s past SUPPLEMENT features on liver and cardiovascular health. Many underlying issues around these organs can be addressed with alpha lipoic acid (as in our lipoic-NAC combo, ThiolNAC), milk thistle, CoQ10, vitamin D3, fish oil (as found in Max DHA or Pro-Omega), as well as niacin for reducing LDL and increasing HDL. Chinese herbal formulations may help with anemia, neutropenia and liver health. Extra vitamin C and fiber can reduce hsCRP levels (worth a try before the problematic and costly statins).
While some supplements are supported by robust amounts of data (fish oil, niacin, and to a certain extent, NAC), our understanding of the benefits of others is more limited. Still, these constituents, such as curcumin, green tea extracts, resveratrol, and other plant flavonoids, have intriguing clinical data for people with HIV, and deserve consideration (and further research!). As ever, we serve as our own experts in our individual studies to evaluate these supplements.
Many HIV patients have cholesterol problems, either as a result of medication or lifestyle issues. However, if you have HIV plus neuropathy plus high cholesterol problems, you may want to talk to your doctor about the drugs being used to lower your cholesterol. These Statin drugs can reduce your cholesterol but make your neuropathy far worse and this needs to be borne in mind both by yourself and your doctor. There is another post about the dangers of Statins elsewhere on the blog (look in the alphabetical list on the right) but this video from one of the best medical communicators around; Dr. John D. Erickson from Denver, helps explain the issue.
Another personal account today from the Aidsmap.com site (see link below). It pretty much speaks for itself and possibly reflects aspects of your own experience with neuropathy and HIV.
Peripheral Neuropathy –
the sting in the tail by Dave
"I felt as though I was walking on bare bones!"
To begin: It is estimated that between 30% and 40% of HIV patients will develop neuropathy. In the United States alone, there are 20 million sufferers (from all sources, not just HIV). It’s one of those diseases that is so un-cool, it barely makes a ripple in the public consciousness and yet if you know someone with mono, peripheral, or autonomic neuropathy, you’ll know how much it has changed their lives.
Becoming an HIV statistic was bad enough but despite all the problems with the various medication regimes and side-effects and assorted crises here and there, I eventually learned to live with it and put it in a file alongside the arthritis and lung problems which had affected me at an earlier age. Okay, I thought, enough is enough; although there are always people much worse off than yourself, I figured I already had my fair share of life-changing health problems. Not so apparently because then, almost unannounced, neuropathy arrived in my dossier.
It started off, like for so many people, with tingling in the toes, then loss of feeling in the toes and feet, then confusingly dull pain in the same places, especially in the soles of my feet. I felt as though I was walking on bare bones. It didn’t happen quickly, over a couple of years actually and although I mentioned it to my HIV doctor, I didn’t make a big deal of it and nor did he. Then gradually, it began to affect my calves and other functions in my body but because the joint problems from the arthritis muddied the waters, it was some time before someone attached the ‘peripheral neuropathy’ label and the treatment roundabout began.
To keep it short, I tried everything, from amytriptiline to capsaicin (chilli-pepper cream) and nothing worked without bringing its own side-effects along to make my life that bit more miserable. The pain and lack of energy got so bad that I found myself staying at home for days on end (thank God for my roof terrace!) My social life disappeared in the mist and my real friends couldn’t take the whining over something they couldn’t grasp anymore – which I really understand but doesn’t make it any easier.
The HIV specialist is sympathetic; he’s seen it before and knows how neuropathy can take over your life, yet strangely enough the neurologist was less sympathetic. He threw out the diagnosis, ‘Yes, you’ve got peripheral neuropathy but because the EMG tests don’t show much, there’s nothing I can do; you’ll just have to learn to live with it...’ and then just as casually, washed his hands and threw me back to the HIV specialist. What he failed to tell me was that the nerve tests very infrequently show the results in glorious technicolour – it’s called idiopathic neuropathy and is very common. My rheumatologist saw no connection between the neuropathy and his field and I had to go to Germany to arrange costly MRIs of my spine to show how joint degeneration and subsequent nerve entrapment can very much have a bearing on your neuropathic status. Ho hum, the medical treadmill can be very wearing, especially when you’re ill.
In the end, the HIV specialist put me on oxycontin because the pain was just too much to live any sort of normal life and that’s pretty much where I stand now. The problem is that oxycontin, just like almost every other form of neuropathy treatment, has side-effects. In this case, an hour before my next pill, I’m sweating and almost crawling up the wall with pain...because the oxycontin says so! I refuse to up the dosage because I don’t want to be completely dependent on a morphine derivative.
Last year I decided that I needed to take control of what was happening to me and if that was not possible, then I needed to know what was going on and why. I trawled the internet and came up with hundreds of sites about neuropathy but they were either rip-off commercial sites, trying in devious ways to sell you something; or they were so basic they weren’t worth reading; or they were directed at diabetics or cancer sufferers (who also suffer in vast numbers from neuropathy) but there were very few sites directed specifically at HIV patients with neuropathy. So to help myself, I did the research both to improve my own knowledge and to act as a distraction from the nagging discomfort and created both a website and a blog. The intention is to provide HIV patients with a readable source of information both about the disease and the options you have in dealing with it. Certain neuropathy treatments don’t work in the same way for HIV as for diabetes patients for instance. Because I live in Amsterdam, the website is in both English and Dutch but the blog is English-language only (http://www.neuropathyandhiv.nl/neuropathiehiv_002.htm) and (www.neuropathyandhiv.blogspot.com).
A final twist in the tail is that strangely enough, most studies have come to the conclusion that almost nothing helps with nerve repair, (not just masking the pain), apart from capsaicin, or smoked marijuana! In my case, the laws of the land aren’t the problem; the fact that I gave up smoking four years ago because of my lung problems, is! Damn! Just when pleasure became legal again!
Like them or hate them, if you're forced to take morphine or other forms of opioids to control your neuropathic pain, they quickly become indespensable; so much so that over a period of time, the body increasingly needs more to achieve the same effect. Needless to say, opioids can be extremely difficult to stop using but the alternative to using them can be far worse - it's a devil's dilemma for many people for whom there are no other options. This article from sciencedaily.com (see link below) explains how and why they work in blocking pain signals. Not the easiest article for the layman to understand but the general idea is fairly clear.
Building A Better Painkiller: Neuroscientists Explain Inner Workings Of Critical Pain Pathway ScienceDaily (Feb. 16, 2007)
Whether they're fighting postoperative soreness or relieving chronic discomfort from conditions such as cancer, morphine and other opioids are powerful weapons against pain. Now, in research published online in Nature Neuroscience, Brown University scientists give one reason why these painkillers work so well.
The secret: They act on a special form of N-type calcium channel, the cellular gatekeepers that help control pain messages passed between nerve cells. By blocking these channels, pain signals are inhibited. These findings not only shed important light on how the body controls pain, they could be a boon to drug development.
"We've known that drugs such as morphine are highly effective at blocking calcium channels, but we've never known precisely why -- until now," said Brown neuroscientist Diane Lipscombe, who led the research. "With this new understanding of how opioids work on calcium channels, drug companies could develop effective new painkillers."
Lipscombe, a professor in the Department of Neuroscience, is an expert in N-type calcium channels, critical players in the pain pathway. At the synapse -- the point of connection between nerve cells -- N-type channels control the release of neurotransmitters. These chemicals carry messages between nerve cells -- messages that include sensations of pain. So if you block N-type channels, you can block pain.
But all of these channels shouldn't be closed, Lipscombe explained. That's because some pain signals -- "That stove is hot!" -- are needed to survive. "You don't want to shut off all pain signals," she said. "You just want to dampen some of them down."
In 2004, Lipscombe and her colleagues discovered a unique form of the N-type channel in nociceptors, neurons that carry pain signals to the spinal cord. These are the channels that opioids act on. But what makes the channels in nociceptors so special?
In their new work, Lipscombe and her team uncover the answer. All N-type channels are made up of a string of about 2,400 amino acids. In nociceptor N-type channels, that string differs by a mere 14 amino acids, Lipscombe and her team learned. This small difference in molecular make-up makes these channels much more sensitive to the pain-blocking action of opioids.
"In nociceptor N-type channels, you get double-barreled inhibitory action," she explained.
Jesica Raingo, a Brown postdoctoral research fellow, is lead author of the Nature Neuroscience article. Andrew Castiglioni, a former Brown graduate student, participated in the research.
The National Institute of Neurological Disorders and Stroke funded the work.
On almost every general information site about neuropathy, you'll come across the name, 'Guillain-Barré Syndrome' somewhere in the lists of the various types of neuropathy that exist. Fortunately, it's pretty rare, although quite serious. You may well have wondered what it is because the symptoms are alarmingly close to those suffered by most neuropathy patients. This article from Lab Tests Online (see link below)explains what it is and how they test for it. Don't be too alarmed...only one person in 100,000 develops GBS but it's a good one for the budding hypochondriac, neuropaths amongst us!!
Guillain-Barré Syndrome
Also known as: Infectious polyneuritis; Acute inflammatory demyelinating polyneuropathy; Landry's ascending paralysis
What is it?
Guillain-Barré Syndrome (GBS) is an acute condition associated with progressive muscle weakness and paralysis. It is an autoimmune disorder in which the body's immune system attacks its own nervous system. This causes inflammation that damages or destroys the myelin sheaths covering and insulating nerve fibers (axons) and sometimes damages the fibers themselves. This demyelination process slows or stops the conduction of impulses through the nerve, interfering with motor control and causing symptoms such as tingling or numbness that typically start in the hands and feet and move progressively upward, affecting both sides of the body. GBS is a medical emergency and must be closely monitored. Those affected may become so weak that they have trouble breathing and their heart rate may become abnormal.
Guillain-Barré syndrome is a relatively rare condition, but it is the most common acquired inflammatory neuropathy and the most common cause of acute paralysis in the United States. According to the National Institute of Neurological Disorders and Stroke (NINDS), about 1 person in 100,000 will have GBS. It can affect anyone at any age. It is an unusual neuropathy in that it spontaneously reverses, and most patients recover most or all of the lost nerve and muscle function.
The exact cause of GBS and why it affects one person and not another is not well understood. The autoimmune process may be spontaneous or may be triggered by some specific disease or exposure. Many cases have been linked with a viral or bacterial infection that occurs a week or two before GBS develops. Cases have also been seen in people with HIV infection, in those with chronic diseases such as lupus (SLE), Hodgkin lymphoma (and some other malignancies), and rarely in those who have recently had a vaccination (such as for rabies or swine flu). Something in these circumstances leads to a change in the immune system's ability to discriminate between "self" and "non-self." Damage to the myelin sheath and nerve is thought to involve antibodies that mistakenly target these tissues.
Signs and Symptoms
Signs and symptoms can progress relatively quickly once they appear. They typically start in the feet and/or hands and spread upward to the legs, arms and trunk. At first they may include:
Tingling or pins-and-needle sensations
Numbness
Tenderness
Weakness, especially in the legs
Muscle spasms
Loss of coordination
Loss of reflexes
More serious symptoms, some of which may require emergency medical assistance, include:
Paralysis
Difficulty breathing and/or swallowing
Abnormal heart rate
In most cases, symptoms develop over hours to days and may continue to worsen for up to a month, after which they slowly resolve. Up to 30% of those affected may still have some lingering weakness after 3 years, and a small percentage may have a relapse years later.
Tests
Patient history is important in diagnosis. The progression of ascending paralysis – starting with feet or hands and advancing upward – is a typical presentation. About 50% of cases also include a history of a recent mild infection or illness like a sore throat, a cold, the flu, or diarrhea. Several tests are commonly used to diagnose or confirm the disease and, sometimes, to monitor recovery.
Cerebrospinal fluid (CSF) analysis – to identify the presence of increased protein; for this test, a needle is inserted into the spine between vertebrae and a small amount of fluid is withdrawn. While some protein is normally present, an increased amount without an increase in the white blood cells in the CSF may be indicative of Guillain Barré syndrome.
Nerve conduction velocity – tests the speed at which impulses travel through a nerve; the nerve conduction velocity test uses electrodes placed on the skin over peripheral nerves and measures the amount of time it takes for an impulse to travel between electrodes.
Electromyography (EMG) – measures the electrical activity of muscles fibers; the EMG test measures the electrical activity within muscle fibers by placing a needle electrode through the skin directly into the muscle and measuring the electrical activity of that muscle. It is usually done in conjunction with a nerve conduction velocity test.
There are several variants of GBS that are associated with specific signs and symptoms and with the production of different types of antibodies directed against gangliosides. Rarely, ganglioside autoantibody tests may be ordered.
Other testing may be performed to help distinguish GBS from other causes of weakness, neuropathy, and immune dysfunction and to monitor the person's health status during illness and recovery.
Treatment
Guillain-Barré syndrome usually resolves on its own. In most cases, symptoms will stabilize and then begin to resolve within weeks or months. The goals of treatment are to try to help decrease the severity of symptoms, speed healing, and to prevent and/or minimize complications. Many people with GBS require hospitalization for careful monitoring and supportive care. If the symptoms are severe, the person may require breathing assistance.
Two approaches are sometimes used early in the disease to lessen the severity and hasten the recovery. Both are intended to decrease the effectiveness of the antibodies that attack the myelin sheath. Plasmapheresis, a process of removing blood, filtering out the liquid plasma that contains antibodies that may be involved in the autoimmune disorder, and then returning the red and white blood cells to the circulation, has proven effective in some people. Immunoglobulin injections to block the activity of the damaging antibodies have also been shown to be beneficial to some people.
In the recovery phase, most of those with GBS will need to undergo physical therapy to help regain muscle strength.
One of the many causes of neuropathy in HIV patients is Mitochondrial Toxicity. You may well have noticed that your muscles, especially in the legs, are having difficulty operating normally and you're experiencing pain and aching. You may have just put this down to the neuropathy in general but it may also be a build up of lactic acid due to toxicity in the mitochondria. Today's article from Aidsinfonet.org (see link below) explains it much better but if you sense the problem may lie here, don't hesitate to consult your neurologist; a simple test can decide.
Mitochondrial Toxicity
WHAT ARE MITOCHONDRIA?
Mitochondria (my-toe-con´-dree-a) are small “organs” in our cells. They are the cell’s power plant. They use oxygen, fat and sugar to produce adenosine triphosphate (ATP). This process is called “cellular respiration.” When the cell needs energy, it breaks down molecules of ATP to release the stored energy.
The more energy the cell needs, the more mitochondria it contains. One cell can have anywhere from a few mitochondria up to thousands. The highest numbers are found in nerve, muscle, and liver cells.
Some scientists believe that mitochondria are the key to aging. As we grow older, our mitochondria collect more and more mutations. Our cells have a way to check for mistakes (mutations) when they multiply, but mitochondria don’t.
WHAT IS MITOCHONDRIAL TOXICITY?
Mitochondrial toxicity (MT) is damage that decreases the number of mitochondria. If there are too few mitochondria in a cell, it might stop working properly. It’s not clear how much loss of mitochondria can occur before there is loss of cell function.
WHAT ARE THE SIGNS OF MT?
One of the most common signs of MT is muscle weakness (myopathy). If muscle cells can’t get enough energy through cellular respiration, they have to get energy without oxygen. This “anaerobic” energy production creates lactic acid as a waste product.
Lactic acid can cause sore muscles. For example, the soreness people feel after running a marathon is caused by a buildup of lactic acid.
Some people with MT have very high levels of lactic acid in their blood. This rare condition is called lactic acidosis. There is a blood test for lactic acid levels, but experts disagree on how to interpret the results. Physical exertion before the blood test – including climbing stairs or walking quickly – can increase lactic acid levels and throw off the test results.
It’s difficult to know if you have MT. However, you can look for the following signs of lactic acidosis:
■Nausea
■Vomiting
■Severe fatigue
■Recent weight loss
■Rapid, deep breathing
■Cramps, muscle aches and numbness or tingling
■Muscle weakness that rapidly gets worse
Lactic acidosis can be fatal. See your health care provider immediately if you have these symptoms.
MT may also cause nerve damage (peripheral neuropathy,). It has been linked to kidney damage and hearing loss. Some researchers believe it might also contribute to fat redistribution (lipodystrophy,) in people taking antiretroviral medications (ARVs).
HOW DO ARVs CAUSE MT?
Mitochondria have an enzyme that helps them multiply. This enzyme is called polymerase gamma, or “pol gamma.” It is very similar to HIV’s reverse transcriptase enzyme. Unfortunately, this means that the drugs we use to inhibit reverse transcriptase can also inhibit pol gamma. When this happens, fewer new mitochondria are produced.
The nucleoside analog reverse transcriptase inhibitors (AZT, 3TC, ddI, d4T, and abacavir) all inhibit pol gamma to some degree. MT is more likely to occur the longer you take these drugs.
Different medications build up in different parts of the body. This could explain how MT caused by different drugs can lead to side effects in different parts of the body.
We know that MT can cause muscle weakness in people taking AZT. It is probably the cause of “fatty liver” (hepatic steatosis) and high levels of lactic acid that can be caused by all of the nukes. Unfortunately, there is very little research on how much mitochondrial damage each ARV causes to different parts of the body. We also don’t know which combinations of drugs cause the most MT.
Researchers know how to measure the number of mitochondria in different cells, compared to normal. However, they don’t know many mitochondria a cell can lose before there are problems.
WHAT’S NEXT?
Unfortunately, there is very little research on MT caused by nukes. Laboratory and animal studies show that MT can cause nerve damage. But there are no human studies.
Over the next few years, researchers will study MT. They will work on tests to identify it. They will also study the link between MT and various side effects. Some researchers believe that certain vitamins and minerals can help mitochondria overcome the effects of ARVs.
In the meantime, people with HIV need to know the symptoms of lactic acidosis, a rare side effect that can be fatal.
